I totally understand. Kitt... drugs are part of our environment.

I guess we just disagree on that?

Take a person with latent CMT... 100 yrs ago. They get cancer, and there is no vincristine... so they die of the cancer. Today they would be given this...and if they didn't know they had CMT, then they would react to it.

Chemo in general causes PN in non CMTers too. It damages DNA.
Only this action is more devastating to the CMTers than non. But both types suffer to some extent.

Environment to me is where you live. That's what I find. Yes, we do disagree. A person with CMT would more than react to Vincristine. They could die. It is deadly to us. That's why it is on the list and with the highest priority. It is definitely high risk. CMT was given a name in 1886. It was just known as Charcot-Marie-Tooth disease or Peroneal Muscle Atrophy and there were no types yet given. Not until about 1991 and then it was just CMT 1 and CMT 2. No subtypes of it either then.

Yes, chemo in general does cause PN in non CMTers. I do know enough people with that problem. In fact they are going thru it right now and others I know have died not that long ago.

We will just have to agree to disagree I guess.

There is much more in common with your positions, Mrs. D. and Kitt, than that contradict! Vincristine is poison for us, and Cipro, Levaquin, and Statins can cause sudden escalations, I have experienced several! It is really important that everyone be well educated about this subject of PN and medications in general. As Kitt said for CMTers it can be life threatening.

Both of you are really driving home the point that there is no substitute for knowledge, especially since our doctors are so seldom knowledgeble about drugs or able to help.

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I don't know what CMT is, but I've heard of it in passing. From what I gather, you guys are saying that some type of inherited disease (CMT) can be induced or brought out by certain medications - is this correct???

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On another note - I been braving high humidity mixed with thunderstorms over the last week or so. I spend a lot of time with my granddaughter, riding bicycles and playing in my yard outside, despite the last 2 weeks of heavy humidity, insane mugginess and sporadic thunderstorms. I have NOT been having those week-long flare-ups anymore, but just random micro-flare-ups during the day that fade out after about an hour or so. I'm so very glad about that -thank God.

I figure I'm doing quite well, considering the bad weather and all. I should stay in during this type of weather, but here, in Chicago, our summers are so short - so, I refuse to let the bad weather ruin our summer time.

I'm not sure if any of you can relate with this stubborn notion. LOL

Yes, Charcot Marie Tooth is inherited. At this time it remains permanent. Different people experience different onsets, and different progression rates, of this type of PN.

Do you read this forum at all Jesse? We discuss this a lot. Especially lately, it seems.

http://neurotalk.psychcentral.com/thread121564.html

Kitt and Susanne post about it often. CMT is the abbreviation for it. They know much more about it than I do.

We are lucky to have both of them to help new posters, as CMT patients do not often come here. They accept their lot, and since supplements are not going to do much for them, unless they have a severe deficiency that needs correcting for other reasons, they won't look here. Some CMT patients have had their symptoms since childhood, others may be later onset, and there is some evidence that drugs may precipitate latent CMT.
It is a complex topic as there are many variants to the genetic
testing results.